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Monday, February 28, 2011

Peas, Blueberries, Chicken Soup, and the Unknown


Sent by Nicole late on 2/27/11

What do peas, blueberries and chicken noodle soup all have in common? Wrenn loves them more than squash or green beans. She has done another 180 degree tyrb and I just can’t explain how or why but apparently God heard me every time I connected her G-tube button to the feeding bag; “Please make this child love food and start eating,” I would chant.

Last week Wrenn made great strides and is now eating every two hours. It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds. On average she eats 4 -5 jars of baby food a day and hasn’t had any issues. She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon. I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.

The OT specialist was shocked when she worked with Wrenn last Friday. And of course, I’m always amazed week to week. Wrenn even munched on a Ritz cracker and did fine.

With such absorption, we are increasing her rejection medications quite a bit. The transplant coordinator told me it’s not unusual to be on twice the normal amount when a diet has drastically changed like Wrenn’s has with solid food. Once we run out of breast milk she will be on Ensure and so the digestive tract will again change along with the levels.

Wrenn is still not sucking but the therapist thinks she’s VERY close. That will be a huge day of celebration for us!

We chose to do the transplant so Wrenn would live as normal a life as possible. No cords, no plastic contraptions, basically no strings attached; that includes the G-button, which is GREAT to have while learning to eat but I want her to be all baby.

I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro. She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste. Food and medications are absorbed differently when given by mouth as opposed to the G-tube and so it’s going to be a couple of months before she can take all of her medications twice a day. Once Wrenn proves she can eat, gain weight and swallow medications without any problems, the G-tube is history.

Right now we are down to eight medications in the morning and three medications at night. We have just three plastic cups holding the medications and I can draw them up in my sleep. Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day. He tickles her and even says, “No Wrenn” when she starts pulling on her cords. I love when they sit together and play. Everything seems normal and perfect. I want it to be perfect forever. Those are the times I ask for a guarantee. The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness. It’s so hard not going there and it will always be near the front of my mind. How could it not!

Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position. I feel once she masters this developmental milestone she will be crawling very soon. The other thing she started doing last week is putting weight on her feet and even stands like a big girl for a second or two (with help of course!) All things she wasn’t doing a week ago.

Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for March 14th and 15th. As soon as those results come back the team will determine when to take out the broviac and surgically insert the port.

A Plea for Emily

Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.
Emily was diagnosed with Ewings Sarcoma of the skull/brain in Feb. 2009 when she was just 10 years old. After 2 brain surgeries, 14 rounds of chemotherapy, and 6 weeks of proton beam radiation, she enjoyed one year of remission. She was recently diagnosed with a recurrence. We pray for strength, courage and healing for Emily. If you can donate, please do so here:

http://www.emilywilson.myevent.com/

And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:

Emily Wilson: Strong and Courageous

Thank you so much!

2 comments:

Susan on February 28, 2011 at 3:01 PM said...

I am breathless with the progress Wrenn is making. She is such a beautiful little girl. I know God has great things in store for her. Keep up the good work Wrenn and let Mommy, Daddy and Tanner take good care of you. You are the true meaning of spirit, determination, love, and toughness. So many lift you up daily in their prayers ~ I for one. I love watching your progress and growth. Keep it up little one.
Susan Eisel
Frostburg, MD

Anonymous said...

She is absolutely amazing Niki! What a little fighter! In moments of weakness let her smile guide your heart. We love you!

Joy

 

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